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….
When I think of my aunt I always think of the small suitcase she always travels with to carry all her pills. She seriously has a suitcase there are so many! It’s something that’s always bugged the crap out of my mom and has kept her from taking medication. She isn’t going to be as ridiculous as her sister even when her refusal to take certain medications is even more ridiculous. I can now see that her attitude has influenced my own. I feel like taking anything other than my Copaxone is excessive and would put me on the teetering edge of becoming a hypochondriac. I’ve already succumbed to the daily ritual of Dexilant because without it I can’t eat without the food either feeling like it’s trying to kill me with knives and fire or the food literally deciding to make its way out the way it came in. This has proven to not only be quite embarrassing at times, but totally sucking all the time. Dexilant is a little blue pill that makes me just as happy as that other blue pill makes many middle-aged to you’re-really-not-too-old-to-still-want-to-do-that-so-often? aged men. I’ve even given in to a daily fix of Lexapro because I was sure both my children were going to get MS too, my son wasn’t going to want to go to college and I didn’t feel like leaving my bed was all that important. Soon after, I had to add some Wellbutrin to the cocktail because even though I had anxiety and was clearly depressed, I was having side effects from the Lexapro that were not acceptable My fatigue had gotten worse and I was also hoping the Wellbutrin would help with my lack of energy. So, here I am without my food escaping or trying to kill me and my anxiety and depression have moved on. Still, fatigue is a common problem for people with MS and mine has become incapacitating at times. I also deal with “Restless Body Syndrome”. Restless Leg Syndrome…pshh, that’s nothing! When my body isn’t going all ADHD on me it often feels like there’s a knife at the base of my skull being twisted back and forth or a vice trying to break my head open. I know I sound overly dramatic but I’m writing this while in a lot of pain. I’ve picked the phone up so many times to make an appointment to see my doctor about these problems but the image of my aunt with her pill suitcase and the sound of my mother’s heavy sigh at seeing her makes me hang the phone up every time. I go back and forth between telling myself that I can manage these symptoms with lifestyle changes to screw your mother and your hypochondriac aunt, you can help yourself with as many pills as you’d like. Right now, I take one shot three prescription pills and eight vitamins a day. I’m feeling like that’s too much already but I have MS and MS has its own suitcase full of problems. Isn’t it okay for me to have my own suitcase and not be seen as a hypochondriac? I already feel like my MS and it’s symptoms are misunderstood to the people around me so I try to hide it as much as possible. It’s getting harder to do that and adding more pills to take throughout the day will only be harder to hide as well. It’s too late to call the doctor today and I’d like to say that tomorrow I’ll blow all the crap in my head off and help myself but I’m pretty sure I’ll hang the phone up again. I feel like I should apologize to anyone who reads this. I’m whining and for that I am sorry……again.
I know my goal for the new year was to be positive, see the silver lining, be grateful, believe in unicorns and wishes made on stars coming true….. Okay, I’m in a bad mood and I’m not feeling too great. My mood is probably what is making me feel bad physically but I have MS and I’m allowed to blame anything on it that I want, especially feeling like crap. Well, not really but today I dare anyone to tell me differently! I am so tired of my insurance company telling me that I’ve exceeded my benefit limit and asking me if I want to talk with a pharmacist to find a more cost-friendly solution, you know, because there is one!?$!# I’m tired of people telling me that my Copaxone is toxic and is only there to line the pockets of “Big Pharma” and the doctors paid to prescribe it. I’m tired of hearing about the recent Gilenya death and how there are surly others that have been covered up. I’m tired of being told that I have a “leaky gut” and that my diet is what caused my MS and changing it is the only way I’ll ever feel better. I’m tired of giving myself a shot. I’m tired of always having a ten thousand dollar balance on my credit card because Copaxone is so freaking expensive. I’m tired of the term “Big Pharma”. Mostly, I’m tired of being tired. It’s exhausting to me to think about the fact there is no cure for MS and that it’s a progressive disease. I want Gilenya to be an option for me both physically and financially. I want the days of jabbing myself with a needle to be over. I want to be able to enjoy fried pickles and a beer without the voices in my head telling me that Dr. Swank and Ann Boroch say these are both taboo. I’m sorry to the two people who read this because who wants to read such crap?! I hope you both are having a better day than I am and I promise to be more upbeat, or informative or at least not so annoying. Maybe I need a nap…..