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.
I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity. – Gilda Radner
Again, my life has decided to accelerate way too fast around a sharp turn and I’m suspended in that turn feeling dizzy from its brutal form. I thought things were going to go differently and that I could finally exhale slowly and effortlessly in this part of my life. I thought this was a part that I could control, even if only part of it. I was wrong and have been utterly surprised by life. I guess, to be fair, it is people or I should say persons that have me shocked and shaking my head. There are people out there who, driven by their want for success and financial aspirations, will lie, cheat and steal to get what they want. I’m bouncing between disbelief and anger and these emotions have me spinning, suspended in a place I don’t like. I know I will land safely and, although I may want to throw up for a while, I will be okay….well at least I better be. I’ve chosen to take what I see as control and try to join a clinical trial. This turn I speak of includes a definite insurance hurdle that I’ve had to jump too many times already and is the most stressful part of my situation. I don’t have the energy to go through it again! If I can get into a trial, I will have my medication and medical care with my neurologist. I am tired of someone behind a desk controlling a big part of my fate with MS. I want to feel like I have some control in this ride and right now I don’t and I’m spinning. I don’t know if this will happen because there is criteria that may exclude me. I also know that my MS can change at any time. Today, I can walk unassisted and see clearly. Tomorrow, both can be gone. So today, at this moment, I am feeling in control and it is liberating. I will hold on to this feeling until it is ripped from my grip. Here’s to today and to now! Oh, and karma…..please let there be karma!
I’m trying to gather as much information as possible about BG-12. When will it be available? What are the expectations? How does it compare with other treatments in efficacy, side effects and safety? But really, my biggest question is how much is it going to cost and will my insurance company cover it. I’m trying to not get my hopes up again but the idea of not having to routinely jab a needle into myself is too wonderful to let go. So, I will continue to scour the internet and ask questions anywhere that may be able to provide answers. My hopes are already up, I just hope this time is a victory.
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.