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.
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….
Today is World MS Day. It doesn’t feel like much to me because it was just MS Awareness Week and MS Month. There has been a lot of awareness and money raised recently and that makes me more than happy. I have a lot of friends who made facebook posts and sent emails about MS symptoms, statistics, needs, hopes and dreams. I’ve decided to take the day to try to plan my year until the next World MS Day. What I see ahead of me is hot weather, graduation, birthdays, even hotter weather, goodbyes, holidays, a much awaited fall/winter, a new year and a beautiful spring. I wish I could include something exciting or even different about my MS but I’m thinking it will stay how it is now- Copaxone, more lipoatrophy, fatigue and cog fog. Oh, and my face will be numb at least a third of the year….seriously. I know this is all really good and I should and will be grateful if this is how it all plays out. I’m just ready for a new therapy. My insurance situation is changing again and this may allow for a change but I don’t want to get my hopes up. So, I will be happy if I get to move away from injections but happy if I don’t because that means my disease is stable. I am going to embrace the heat this summer because near the end of it comes a bittersweet goodbye. I’m looking forward to the holidays and birthdays because they are always fun. I’m actually use to having a numb face so maybe I should start having my eyebrows waxed? That would be a plus of having a numb face. Always try to find a silver lining….
I’m going to set resolutions for 2012. I feel strongly that I need to do this more so than ever. There are a lot of things about MS that are just plain cruel. Unfortunately, most of these things cannot really be controlled no matter how hard we try. There is another cruelty that, while I can’t control it, someone else can. I’m talking about insurance companies. I’ve been paying hundreds of dollars every month for my Copaxone. Last year, I was so frustrated by this that I called to see what my copays would be for Gilenya. It’s a pill so I thought it would be cheaper than the injections. I was told my copays would be $50 a month….yay! So, you can imagine my joy when my neurologist told me at my visit in November that he thought Gilenya would be a good choice for me but I could also think about Tysabri. After months of researching and asking questions about both Gilenya and Tysabri I decided to change to Gilenya. Changing treatment for an MS patient is a really big deal. We don’t have much to fight with and what we do have takes time to make a difference. So, before I called my neurologist to start the Gilenya ball rolling, I called my insurance company to verify the out-of-pocket cost again. This is where my bad mood started. “The medication you’re inquiring about exceeds your allowed coverage” and “Would you like to talk with a pharmacist to find an affordable option?”. Arrgghh! *Big breath in and slowly exhaling* I won’t go on to complain and express all my frustrations about every part of this because I’m sure anyone reading this has experienced similar frustration. My biggest/number one resolution for the new year is to make the best of all of this. So I have thousands of dollars on a credit card- I get points to use for Christmas at the end of the year. So I get to continue injecting myself with Copaxone- it really is the safest of all the DMDs. So I will continue to get lipoatrophy for at least another year- I have a really good excuse to not have to wear shorts in the summer. I have decided to start the year off with a smile and I hope you will too. There is a silver lining, we just have to sometimes agree to see it.
I wish someone would make the decision for me. I know whatever I decide I’ll question incessantly yet if someone else were to make the decision I would trust it. I guess I’m still working on trust issues with myself. One of the hardest parts about having MS is all the uncertainty. How am I going to feel in the morning? Is this heat going to knock me off my feet? Will this glass of wine give me a four-day hangover? Will my MRI show progression? Will the therapy I choose help me? This last one is the uncertainty that’s keeping me up at night. I see my neurologist the beginning of May and, at that visit, I need to have my decision made. Do I switch to Tysabri or Gilenya or do I take my chances with staying on Copaxone? I’ve been on Copaxone for three years now and it’s worked really well. I haven’t relapsed and my MRIs haven’t changed. What has changed is my body. I have developed lipoatrophy from my injections and I am progressively losing places to inject. I don’t want to continue injecting to where I lose the option to inject at all. One of the first things my neurologist told me, and I agree, is that I don’t want to run out of options. I don’t want to take injections off the table by injecting Copaxone for too long. The other injectable treatments don’t cause lipoatrophy like Copaxone but they come with other side effects that I know would be really hard for me in other ways. Still, I need to have these as options in case everything else doesn’t or stops working. Tysabri and Gilenya are riskier than the injectables. There have been deaths from Tysabri and just this week a man died within 24 hours of taking his first dose of Gilenya. Now here comes the hard part, because when death is thrown on the table you’d obviously avoid it at all costs, but it’s not so black and white. First, we don’t know if Gilenya was the cause or even a factor in this man’s death and, if it was, 28,000 people have not died. Those are still really good odds. The odds are really good with Tysabri as well. Both treatments require testing and screening before treatment can begin and you are closely monitored while on them. I tell myself that it’s the quality/quantity question and without a doubt I choose quality over quantity. My problem is deciding where to draw the line. It’s the uncertainty while trying to stay ahead of this disease in any way that I can that has me up well into infomercial time. How far do you go to do that? Over the next four months I’m going to read as much as I can and make a list of questions for my doctor. I know it’s going to be like the time when I was a little girl and after waiting almost two hours to get to the top of the water slide line had to decide which of the three terrifying slides I was going to plummet down or would I take the walk of shame back down the line. I don’t like being scared and, now, I’m feeling terrified. I also don’t want my decision to ever make me feel ashamed. I am a wife and a mother and I am needed by three amazing humans. I don’t want to let them down…at all. I obviously don’t want to die, but I also want to be able to walk, see and really participate in our life together. I want to win, but I want someone to tell me how to do that. What would you do?