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….
…that’s draining me into a lump on the floor. Seriously, I am so tired and not normal tired, MS tired which is normal tired on either steroids or crack-your choice. I haven’t written in over a month now and I feel it mentally and emotionally. There is therapy in writing whether it be journaling, letter writing or blogging. I’ve missed this and I have chosen to blame the heat for its absence. I’ve never asked my doctor why the heat affects people with Multiple Sclerosis so greatly and why our fatigue is so bad. What is happening in our bodies that makes these so? I figure inflammation plays a part but what else? I need to remember to ask this next month. “Remember”…..that’s funny.
There are some awesome things and tricks I’ve learned the last few years that really do help with the heat: * Ice behind the neck (my personal favorite!) *Putting wrists under cold running water or against ice packs *After a shower allow hair to air-dry while laying on the bed with the ceiling fan on high *Freeze juice in ice-cube trays to munch on throughout the day *Tell yourself everyday that summer doesn’t last forever
The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!
I’m trying really hard to be patient. This is hard for me. I bite into pizza before it cools and burn the roof of my mouth…every time. I always pull things out of the microwave and oven before the timer goes off. I could give example after example but I think it’s pretty clear. This is a test for me and I hate it!
I called my neurologists office and spoke with the trial coordinator. I told her I wanted to enroll in a trial. My neurologist participates in quite a few trials so I’m thinking this should be an easy feat. Well, it’s been almost a week and I thought I would have heard back by now. I feel desperate about this so I’m sure that’s not making being patient any easier. I don’t know how long this process usually takes and I should have asked that question as well as a few others. I’ve looked on the government clinical trial site and found the perfect one for me AND my neurologist is on the participation list. Maybe I should have asked about this study specifically? Well, I’m whining and feeling sorry for myself but it’s so hard for me to wait for anything and waiting for this……argh!