To prepare for this possibility, we took our daughter off my health insurance and put her on my husband’s. It’s inferior to mine, but it will disassociate her from the disease, so she’s less likely to be rejected from health insurance based on her family history of MS.
Today, my daughter understands only that mommy has to give herself a shot every day, and I have to wear a special vest in the heat (it has cooling packets in it, to keep me from overheating and my symptoms from flaring). I’ve planned to talk to her about why her mother has a “special doctor for her brain” when she’s old enough to understand that she might inherit my need for said doctor. There’s a 9 to 10% chance that she’ll develop MS, compared to the average person’s .001% chance.
We’ve taken other preemptive measures, as well. For example, all of our retirement savings are now in my husband’s name, so they can’t be seized upon declaring bankruptcy. I also maintain a handful of high-limit credit cards with no balance, in case I ever have to pay for my medication in cash when I no longer have insurance to cover the cost.
And if and when our house exceeds $75,000 in equity and no longer qualifies for the California Homestead Exemption, a law that says it can’t be seized in bankruptcy as an asset), it will go into a trust in my husband’s name, and will eventually be given to our daughter. (For the record, we’ve been told by our accountant and by The National MS Society that these measures are legal.)
We plan not to have any more children, not only because I don’t want my daughter to have to help raise a sibling if I’m incapacitated, but because we’ll be best able to care for her financially as an only child.
We don’t want to file for bankruptcy, but it’s our safety net–our embarrassing, scary, horrible safety net.
It isn’t uncommon for married couples in our situation to get divorced and then continue living together in order to file a single income and be eligible for lower taxes and more benefits. My husband and I are prepared to do this.
Our Last Resort
I feel lucky that I was diagnosed so quickly. I feel lucky that those $120 syringes are slowing the progression of my disease.
But I’m also terrified.
Being diagnosed with MS feels like being hit by a train. I always point out that women are disproportionately susceptible to life-changing autoimmune diseases, and the best thing that you can do is to be prepared. Was I prepared? Of course not.
Some people who don’t understand the all-consuming, endless cost of a disease like MS think that we’re being flippant by even considering declaring bankruptcy. They truly don’t understand that the costs for my medication, my annual MRI, my rehabilitation therapy and the occasional hospitalization (I’ve been admitted twice so far for suspected strokes) are nearly double my mortgage.
We don’t want to file for bankruptcy, but it’s our safety net–our embarrassing, scary, horrible safety net. We want to pay our own way and continue to be the self-reliant family that we were in the past. It feels like the biggest failure in the world, after putting myself through college and doing everything right, to think that we might not be able to take care of ourselves.
Above all else, I’m fighting to preserve our home, my daughter’s college savings and our assets. We can’t risk losing everything to an illness that’s never going away.
Money isn’t always easy to talk about, and the author has shared details about her finances and her life. When commenting, please give her the respect due to a member of the LearnVest community.
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