I hadn’t planned to get into the heavy stuff this quickly, but it’s what’s on my mind and heart this week, and I don’t seem to be able to write anything else. This is the tip of a very big iceberg involving work, disability, poverty, what it’s like to obtain and receive social services… the list goes on. This week I’ll just share the nightmare I went through and hope it spares someone else from making the same mistake.

Open enrollment for ACA health plans is November 1-December 15. I planned to stay on my current subsidized plan so technically could have done nothing, but the premium of $152 per month was burdensome. (I know others pay more and are probably screaming at their screens right now, but seeing as how I can’t get paid by the insurance plan I’ve paid into all my life for just this purpose—Social Security Disability Income—it is a hardship.) I wanted to check my current income figure and adjust it to see if I would get even more subsidy. The income figure in the system was several years old; if I made that much now, I would be bathing my sore bones in a hot spring somewhere rather than blogging about the difficulties of my life.

I grabbed my calculator and averaged out my monthly income based on my 2016 tax return and my hair stood on end. No wonder things felt tight. I keyed in the amount and hit “enter.” Immediately I was taken to a screen that said “Your application for Apple Health (Medicaid in Washington) has been approved.” Oh wow, I suppose that’s good, right? Further exploration revealed that when I was approved for Washington Apple Health, my existing plan, for which I was paid through December 31 and for which I had reached the deductible, was terminated. All the procedures I had planned for December to take advantage of coverage—poof, gone. I have no access to the coverage I worked so hard to build up.

But Medicaid is free, right? Sort of. They, not I, decide what procedures I can have. You have to use their doctors, not your own, which in my case is a dealbreaker. I need the doctors who have known my body as it evolved after I was hit. Washington Apple Health doesn’t pay for chiropractic care. My chiropractor is the only one who gets me any relief for my unstable rib head, and in fact my physiatrist (not psychiatrist; a physiatrist is a long-term care specialist for people who have undergone severe physical trauma) concurs that it’s the only viable treatment. It is likely that surgery would make the pain even worse by limiting spinal mobility in a critical “bendy” part. Worst of all, the state doctor may not agree with my pain management plan and I may get jerked around in the process of fixing something that isn’t broken, all because of political bias against the medication that works for me.

What I mind most is that my health care decisions have been taken out of my hands and placed with a stranger. I don’t get any procedure without the approval of their case manager. That case manager could be my existing clinic if they took Apple Health. They do not. I didn’t know not taking it was even an option.

Who do you call to resolve all this? I started with the customer service line on the Exchange. I asked to simply erase my series of keystrokes and not save the information I’d entered. Just set it back the way it was and leave it alone. Too late, the information had already been verified electronically with the Social Security Administration and I would be guilty of fraud if I nudged up my income number to price me back into the subsidy range. (If only the SSA acted that fast on disability claims!) If I opt out of Apple Health, I can’t receive any subsidy and my monthly insurance cost will be more than $600.

I’m going to continue paying full price to see my regular doctors less often than I need to, no change there. I’ll keep the state services card for hospital coverage in case I fall off a sidewalk and break my leg. If I can document 3 steady months of self-employment income above the cutoff amount, I will be allowed to re-enroll in a subsidized plan that my doctors take. I’ll be getting on at midyear so there’s no chance of reaching my deductible; my plan to get my health services up to date has been knocked back 2 years.

This is not a safety net kicking in to help me, it’s stripping away my choices and autonomy. It’s the state assuming that I don’t know how to best care for myself. And don’t get me started on the voters who now think they have the right to judge me and decide what I do and don’t deserve.

It’s hard not to loop back to the one man who did this to me, the inattentive driver who made my life this hard. I survived his negligence; I want to spend my precious borrowed time grooving on every breath. How is all this not his problem?

I would like to hear about other people’s struggles with the system. Please keep it to your personal stories and save the lengthy political screeds for the appropriate forums where your words can make a difference. Here, we share our frustrations and triumphs, and offer suggestions to help one another do better within a system that usually doesn’t serve us well. And for the love of all that is holy, if you haven’t updated your status on your state’s health plan exchange yet, proceed with EXTREME caution. Do not make a single keystroke without researching the implications. Best of luck to you.