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…..
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.
Everyone reminisces and daydreams. Today, along with everyone else with a disease like MS, I’m thinking about Christmases of yesterday as well as trying to imagine my Christmases in the future. I’m trying to balance my emotions and especially my fears. When I think of Christmases in the past I’m left with not only smiles from the memories but regret because I’m sure I could have appreciated it all more at the time. When I imagine my future Christmases I immediately fret about the scary possibilities. Fortunately, I almost immediately have excitement for how it can be. I could still be relapse free and even better I could be symptom free. It seems like as soon as one new therapy is released talk of three more is all the buzz. This is a gift indeed. As the story goes I will too. I can only react to today and by realizing all that is good, even with my MS, I am laying the groundwork for merry Christmases to come as well as seeing my past Christmases through a rosier lens. Despite my MS, I am truly blessed. Merry Christmas!
I had someone else with MS tell me that the worse thing someone could say to her is “It could be worse”. My guess is that this statement somehow doesn’t make her MS feel validated enough. I don’t want to say that people with MS like to feel sorry for themselves or that they want others to feel sorry for them because we’re all just trying to navigate the best that we can. I do wonder sometimes about what makes the difference. I love it when people tell me it could be worse. I know that it can be worse and being reminded of that makes me feel stronger, not just because I know that there are many things worse than MS but because it makes me feel like the playing field is more even. Before I was told I had MS, I was tested for several other things. The obvious potential culprits were MS, stroke, brain tumor and ALS. This is the order of bad to worse to me so, while I do have MS, I know it could be worse. I don’t have a brain tumor, ALS and I haven’t had a stroke. I remind myself of this quite often and when someone tells me that it could be worse, they’re doing the reminding for me.