Christmas this year is proving to be difficult. While Christmas pasts have held some level of mental fatigue in both the years before MS and the years since, I have never been denied any of my Christmas physically…until now. The weekend after Thanksgiving is when we decorate. There are three Christmas decorations that are a part of Christmas that really matter to me and are traditions that I don’t want my family to be without – the tree, the Nativity and the mantle. I know these things are not the important parts of Christmas but, as a mother and a homemaker, they feel important to me. They are my contributions to my family’s Christmas. Unfortunately, my body is having no part of Christmas this year and decided to take it out on the tree first. Whether it was trying to balance on the ladder, keeping a breakable ornament in my hand and off of the tile floor or being able to use my arms and legs long enough to get things done without going numb I failed. After a few days, I naturally began to stress and feel guilty that it wasn’t done which only makes it worse. While it isn’t certain if stress can cause a relapse, it does worsen symptoms and can do so rather extremely. This made for a rather pathetic cycle. It took me almost two weeks to finish our tree! I still have to get the mantle done which isn’t anywhere close to the job the tree is and the Nativity is really just a matter of finding the right storage box but I know that it isn’t going to get done today and most likely tomorrow. As I was feeling pathetic getting the tree completed I kept seeing the Charlie Brown Christmas tree and every time my body failed in someway I saw Lucy pulling the football away just as Charlie Brown was going to kick it.
Today is a day that is really important to me. As a woman, a mother and a Multiple Sclerosis patient there are important issues that will drive me to the ballot today. First, it really wasn’t that long ago that women weren’t allowed to vote in The United States so not doing so, in my opinion, is disrespectful and sad. There are also a lot of women’s right issues being considered by both candidates.
As a mother, I want the college education that my children have earned academically to be affordable. There is talk that the interest rate on student loans will go up depending on the victor of the day’s event. I don’t know how our country can be better if our children don’t get good educations. We want to be industry leaders in science and technology yet we don’t want to make the decisions and sacrifices to get there. It benefits us all no matter whose child figures out the next big thing or a bunch of not so big things. I’m willing to pay into that.
Lastly, I hate to ever say that I like someone having MS but the fact that both President Obama and Mr. Romney have been touched by this disease through family members gives me hope. Unfortunately, my hope seems to be getting suffocated by all the bull. First, our system of government makes it hard for things to really change. Our healthcare system is badly broken and the changes that need to happen will become victim to the people we elect to change them. The President’s family member with MS has passed on so I can’t say for sure if he really sees and knows the burden that MS puts on those inflicted physically, emotionally and fiscally. Mr. Romney’s wife has MS and so I’m sure he’s seen physical tolls of the disease and I hope he has tuned in and acknowledged the emotional struggles. I’m going to assume he has. Where Mr. Romney loses me is the financial stress and burden of MS. Being rich and having MS is a whole world of different from even being middle class and having MS. Trying to compare and truly see the space between the rich and the poor with MS takes me past anger to genuine despair. I’ve been denied insurance twice since my diagnosis almost four years ago and denied medication coverage twice while having insurance. Even when things have been at their best and I’ve had both insurance and drug coverage my copays have been ridiculous. My disease modifying medication costs $43,000 a year. Add MRIs, doctor visits and other medications and you can see that MS isn’t cheap! Our savings account has dropped over 50% in just under four years. Too bad there isn’t a light at then end of this tunnel and too bad that while people argue points that pander to one of the two political extremes people, like me, are trying to keep their balance, squelch a headache and keep some body part from going numb due to the stress of changes that needed to be made yesterday. Still, I honor my right and I do choose to believe that what I am doing today will help the future to be a little brighter, even if it’s only instilling the importance of it all in my children.
The Weather Channel just showed a picture of Hurricane Isaac and likened it to an MRI, circling the eye of the storm the way an MS lesion would be circled. So, here I am writing about Hurricane Isaac, Multiple Sclerosis and stress. Isaac has me very stressed. My son just moved to New Orleans Wednesday to start his freshman year of college. At midnight he will be in lock-down in his dorm. From what I am hearing, they will most likely lose power and there will be flooding. I’ve been glued to the TV all day, checking email and facebook for updates from the university and receiving and making necessary phone calls. He is hundreds of miles away. Piling on top of this is the fact that my son is fighting his own immune system and has been dealing with horrible symptoms. He has Rheumatoid Arthritis. The day before he left he struggled to pick up a glass. Stormy weather for him is what stormy weather is for me- horrible. All my symptoms return or worsen. He has debilitating pain and muscle weakness. He takes multiple medications to fight his disease, two of them suppress his immune system. He is sick and coughing and that worries me because it’s easy for his body to develop an infection, especially now that he won’t have access to doctors and medicine. This stress has my body numb and my muscles tight. It also has me thinking about how MS is like a hurricane, even when you know they are coming, they never let you know what they’re going to do once they have fully arrived and they always leave damage behind.
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…..