Like the chronically ill do not already have enough problems, we shouldn’t have to worry about whether we will be able to get insurance. The bullshit we navigate on a daily, weekly, and monthly basis would send most people over the edge. This is probably why a lot of us are on anti-depressants, too. I used to think I needed them because my disease affected my brain chemistry, and being bed-ridden or at least housebound for months at a time would make anyone depressed…then one day I realized, nope, I think it’s the insurance company and the doctors’ offices’ billing people and the laws I’m constantly trying to get around. I am not actually depressed; I am slowly but surely just going insane.

Getting needed medications can be a huge hassle. We all know Xanax is a controlled substance, and yes, it is hard to get filled. But Lomotil? It’s like Immodium on crack. Not only can I not imagine what good would come out of overdosing on or abusing it, I feel comfortable saying that anyone who takes that much, once, will go so long between dumps, they will never do it again. Because of this, using my online pharmacy has become vastly more complex. I still end up having to purchase multiple drugs like this locally.

Needles are yet another pain in the ass. It amazes me that I can have a prescription for a vial of Solu-Cortef, which has to be administered intra-muscularly, and I cannot get a needle with which to inject it. Okay. I got a separate prescription from my doctor for the needles. Now when I refill the vial, I also have to refill the needles, and most of the time, the pharmacy still “forgets” the needles.  For a short time, I took another injectable medication that required sub-q needles. The only way I could get them was to go to the pharmacist, and “show proof of need”. This required I bring my refrigerated vial with me to the pharmacy each time I needed needles. No, I am not joking.

I don’t even want to think about HIPAA. Shoot me. HIPAA was probably originally intended to protect patients from something, but I am so beyond any of that. I have searched and searched for a way to just waive my HIPAA rights…The hackers can easily get my information, but transferring records between doctors requires multiple in-person signatures, four vials of my blood, and the promise of my first-born’s hand in marriage.

Most everyone has probably experience the joy of purchasing decongestants. My fantastic state won’t allow you to get them unless you have a prescription, and for quite some time, probably in an arranged handshake of a backroom deal, you could not buy generics either. Also, some random lawmakers decide how much I can buy. So my two week supply of 12-hour pills is not 24 pills, because that would make sense. This also causes issue if my child gets sick. She doesn’t have an ID, so she cannot purchase any. Someone has to sacrifice theirs if everyone needs them at the same time. The answer? Stockpile. Which I imagine is the LAST thing the lawmakers intended, but screw them. And I have to answer twenty questions every time I buy them. “My doctor just told me to come here and get them,” is not an acceptable answer. At least I can buy them in another state. I simply get to feel like a criminal every time. Yay.

The best part of being chronically ill and having a rare disease that requires tons of medications to treat is the surprises that show up in drug tests. When I was still working, I flunked a drug test quite unexpectedly. This led to twenty phone calls until finally someone above me just decided he didn’t care. It turned out my stomach medicine had a teeny bit of something in it that set off the test. Life is never boring, at least.

And I have yet to call the insurance company to figure out why they won’t pay for sedation during a colonoscopy. I can’t wait.


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