Well, it’s that time of year again. The time of year that I dread – it’s time to put in my patient assistance application and wait. And wait. And wait. And wait. Did I mention I have to wait? One of the first things my neurologist told me when he gave me my diagnosis of Multiple Sclerosis was that stress is very bad for MS. He was glad that I didn’t work outside the home – because stress is bad for MS. I should seriously limit my volunteer activities because, stress is bad. Perhaps I should hand off my responsibilities as room mom of my children’s classrooms because, stress if bad. Those homebased businesses? Well, maybe it would be better to just let them lapse and give yourself a break because, stress is bad for MS patients. Alright already. I did what I was told and yet – the biggest stressor of my entire year is from the very community that tells me to be wary of stress – the medical community.
I’ve been injecting myself every other night for 4 years with Betaserone. I’ll post about that experience specifically in another blog. The decision to go with Betaserone over the other drugs was one my doctor and I made with great deliberation and consideration. We both agreed that Betaserone was the best choice for my situation (hey, I just realized, I’ve become “The Situation”!!). My doctor ordered it, the Beta nurse came to my home and showed me how to give myself injections and I started down this path. Then, my insurance got in touch with me and informed me that this particular drug, the one that my doctor felt was the best for me, would not be covered – unless, of course, I had tried and failed 2 other drugs. What? Tried and failed? Okay – I’ve own businesses of my own. I get cost-savings. I even understand it in the context of drug utilization costs – especially in situations like, for instance, reflux (acid indigestion). Let’s try the lesser expensive options first. If they fail, well, sorry for your inconvenience, dear patient, but had it worked, everyone would have been happy and we, your insurance company, would have contained some costs, saved some money and been better able to afford the huge bonuses we’re paying our higher-ups. But we’re not talking about reflux or any other potentially transient malady. We’re talking about a progressive, debilitating disease that, unless stopped, or at least slowed, may well cost me my ability to walk, to speak, to think, to breath, to live. I can’t afford to “try and fail.” My only option is to try and win.
So I asked my Beta nurse how much the Betaserone would be if I didn’t qualify for patient assistance, the qualifications of which, by the way, the company will not release. At that time – 4 years ago – she told me the yearly cost was approximately $35,000. I recently checked again – it’s up to $41,000 per year. What? Who can afford that? Not me.
So the yearly stressor looms every December/January. Fill out the paperwork and wait. And hope. And think about it. And lose sleep over it. And wait. And talk about the “what ifs” with your partner – who also didn’t sign up for this. And wait. And stress.
I’m there now – in the holding pattern. What will I do if I’m turned down this year? Don’t have a clue. I’ve decided to push it out of my mind and just keep doing what I’m doing. Stress really does affect us all. Certainly I see a HUGE difference in my symptoms when I’m under stress so – I’m choosing not to be under stress. I cannot affect this situation – I can only choose how to react to it. I’ll do some yoga, go on some walks, breathe deeply, drink some tea, visualize receiving the good news that I qualify and keep going. Four years ago this type of thing would have driven me CRAZY!! It’s still one of my least favorite things to deal with in my life but – MS has taught me a lot of things – among them, patience.
So, what say you? Have you become a more or a less patient person thanks to MS? I’m certainly addressing you MS’ers out there – but also, I’d love to hear from the spouses, friends, caretakers, and loved ones. Does patience come from being a patient? Or from knowing one? Or has it cost you your patience?
Special thanks to Keattikorn at http://www.freedigitalphotos.net/images/view_photog.php?photogid=1692 for the beautiful lakeside picture emulating patience.