I am luckier than most. After 20 years of having multiple sclerosis I am still relatively healthy. I have a spot on my foot which is mildly numb most of the time and markedly numb when I have an exacerbation. This is damage I got from not treating an exacerbation with steroid therapy. Sometimes when I am dancing I can feel weakness in my legs, but I still dance. I will always dance. Heat and I have a love/hate relationship. I love a sauna in January. That first sweat is such a cleansing feeling. But a prolonged heat wave in summer will sap me like an iPhone battery. I have extreme vertigo whenever I ride a canoe, an amusement ride, or a swing at the playground with my son. These are things I no longer do. They do not effect my quality of life. Life has so much more to offer than amusement rides.
I can go through long periods of remission. Sometimes years. There are times when I am strong. I can haul 50 lb. bales of hay, show a cow who is boss. But when life is stressful, like say after a divorce or economic insecurity, the stress can be too much and I get sick.
It is my pre-existing condition. There have been times when I have not had health insurance. When the divorce papers were signed by the judge I lost the health insurance I had with my husband. I was only working a part time job. My state, Maine, had not expanded medicaid under the Affordable Care Act. I fell into this bubble. One that with just a small bump in income of a couple thousand dollars would qualify me for the ACA.
Sometimes when I feel an exacerbation start I have this feeling in my head that someone else is driving this body. Simple tasks such as shoveling a car out in winter will feel like epic adventures requiring more effort than this body is capable of. Thinking becomes clouded. The only upside I can see is the extreme cleaning my house will have after five days of IV cortico-steroid therapy. Lemonade.
So it was in a March, after a long winter of extreme weather, car troubles, and a steady eye on my bottom line that I could feel the disjointed arrival of an exacerbation. I had no health insurance. A call to my neurologist set up the IV therapy. I arranged to have the medication before I went to work every day. I have a job that does not pay sick time. When I showed up at the registration desk at the hospital they helped me sign up for uncompensated care. The debt from the steroids would have been unmanageable on a 15,000 a year income. So, yes, your tax dollars paid for my medicine. Thank you.
It would be another six months of working multiple jobs before I finally got a raise in pay and enough hours of work to qualify for the ACA. For my family of two that magic number is 18,000 a year. I just squeak by. If I make just a little less than this I can lose my health insurance again because Maine still has a governor who will not expand medicaid. I signed up for a silver plan with a 250.00 deductible. I received a subsidy which means that my monthly payment was 10.00 a month. I have re-enrolled for 2017 and that monthly payment has gone up to 45.00 a month. Still affordable.
But all this may just be moot.
I want to trust that we have leaders that are going to make sure that I can get the care I need without the worry of crushing debt. I want to trust that when, not if, I get sick again I can treat the illness and forestall any damage it may do to my nervous system, so I can keep walking, so I can see.
I know for insurance companies, members of congress, think tanks, and governors my story is just a number. It probably does not make a blip on their radar. When people become numbers to the policy makers the real life consequences must seem abstract. My life is so far removed from the desk that pens these laws. But a repeal without a reasonable replacement seems like poor political decision making to me. I follow the news everyday. I watch a Congress dismantle the very thing that has insured an element of economic security to a life I have worked hard to rebuild after divorce. The glee with which this has happened does not promote much confidence or trust. I want to trust we have leaders. I want to trust. I'm just not sure I can.