A Study in Ridiculousness: My Experience With Treating Colitis (so far).

If you read my last blog, which I know that you must have, you know that I have a very recent double diagnosis of Colitis and a Cavernous Malformation on my cerebellum. There is not much to talk about with my brain, other than I am working with my Neurologist to realize my dream of having an actual picture of my brain on a coffee mug. We are also working together on a migraine strategy, which has no obvious triggers at this time. Any input from you migraine sufferers out there is welcome! We are mostly sure it is not food related, but open to suggestions.

That leaves us with the colitis. Not just the colitis per se, but my experience with insurance, doctors, and healthcare during this, my time of medical need. I think it is important to note that as I am writing this blog, I conscientiously did so while holding a treatment enema (you read that right) in for at least 30 minutes, but ideally, over night. Remember that as you are reading my words. We will revisit this.

My insurance plan year renewed on December 1st. I was able to see my PA and get the MRI on my brain, and see my Neurologist once before the plan year ended. So far, 26 days in, I am responsible for a Neurosurgeon visit ($250), a Gastroenterologist visit ($250), a Colonoscopy ($415), the facility charge for said colonoscopy ($765), the creepy anesthesiologist who is not covered by my state’s largest insurance provider ($1220), and now, the medication. I technically met my deductible about 10 days into the new plan year. However, it all depends on how quickly the providers bill. They demand payment up front, but then some drag their feet on billing the insurance company. The issue here is that you, the patient, are eaten alive in medical fees that are required upfront, when your insurance could be kicking in and covering the majority of the fees. This is the case with the treatment for colitis.

After the colonoscopy, my doctor came in and told me everything looked great except for the colitis he found and showed me the picture. It was biopsies, a prescription was handed to me, and I was asked to visit his office in 3 weeks time. He mentioned that there is a coupon for the drug he prescribed, so I knew there was going to be a problem. In the meantime, I have no idea what colitis is, and trying to research it leads me nowhere. There are so many different variations that mean different things. I figure that I will get a better picture when I visit the office after three weeks. We went straight to the pharmacy to ask about the medication cost and get it ordered.

My belly just made a screaming noise at me. We have 10 minutes minimum to go on the enema.

I asked Wave to inquire about the cost of the prescription. I knew in my mind a dollar figure that would be acceptable, and hoped that it would fall well beneath that. Considering I just spent at least $1,500 in 10 days, I need to be mindful of what we can afford without murdering our savings fund that is ear marked for new air conditioners next year. The pharmacist took a moment and reported back that a 30 day supply was $990. WHAT. Suppositories. That you put in your bum. 30 of those were almost $1,000. You’ve got to be kidding me. I asked for the prescription back, and called the doctors office the following day.

First, I spoke with billing. I asked when everything would be billed to my insurance company. I was told that they were at least 2 weeks behind, and I shouldn’t expect anything sooner. I explained that the doctor asked that I be on this medication that is $1,000 for one month without insurance and asked if they could try a bit harder in light of these circumstances. I was told they are doing the best they can. Really? Is that really the best you can? I have a job with clients. If they are in a bind and need help, I can always try harder and do better. Accepting this answer, I ask if I can speak to someone who can help me to get a more cost effective medication. I am transferred to the receptionist.

30 minutes achieved! I feel like a real astronaut now. (I tried to find a picture from the enema scene in the movie ‘The Right Stuff’. The internet has failed me.

I explain to the receptionist that I am not a Rockefeller, and I (like most people) can’t afford to shell out $1,000 for something that I will be shoving up my ass for 30 days. She said that she also could not afford that, and was sending a message to my doctor’s medical assistant to get a different prescription. In the mean time, another migraine, more urgent bathroom trips and stomach aches, and extreme fatigue. After 5 days, I call again, and explain that I still do not have medication to deal with the colitis that the doctor found. I was told that the doctor JUST responded to the medical assistant, and they would call in the prescription right away.

I seem to be lucky in that every time I call a service provider to follow up on a request, the person in charge JUST responded. I mean, my timing is impeccable I guess.

So, the pharmacy robot calls me to tell me that the prescription is delayed. She tells me that it is the EXACT SAME PRESCRIPTION THAT I TOLD THEM THAT I CAN’T AFFORD. I am now at a cross road. Do I just let it go through and hope that my insurance deductible is met by the time it arrives? In speaking with the office, I don’t have a lot of hope for that. So, I call. I tell the receptionist who was nice enough to help me before what happened. She is now irritated with me and tells me that all she can do is transfer me to the medical assistant’s voicemail. “Look, I am almost at the end of my rope here. You can transfer me, and she won’t get back to me, and here I am, with these bad things happening, and getting next to no help here.” The snark was thick. I felt bad, but at the same time, I think of my clients, and how I treat them. The feeling disappeared quickly.

The pharmacy called me two days later, my new prescription was in! It was December 22nd. The colonoscopy was on December 14th. My insurance deductible was just met that day, so I went to the pharmacy to collect my prescription. “That’ll be $15, please.” I happily handed over the money, and was handed a huge sack. “Do you have any questions?” Embarrassed, I said no, and left abruptly. I quickly realize that I was prescribed daily enemas. Not only that, but I was expected to hold the fluid in my body for at least 30 minutes, but ideally all night long. WHAT? Who comes up with this stuff??? Not only that, but the cost without insurance was $630 for two weeks, or $1,260 per month. The medical assistant called in an even more costly prescription. WHAT IS WRONG WITH PEOPLE?? I called the pharmacy and asked them to please fill the platinum suppositories, and asked if I could return this nonsense. They refused to return it, and I have since come to learn that it is almost impossible to donate unused medications to people in need.

The pharmacy called today, December 26th, to tell me that the prescription was ready. The amount? $370. Much less, and yet still, unaffordable. I remembered that the doctor said that there was a coupon online. I looked, printed it out, and took it to the pharmacy. Even with the coupon, the cost was $130. As an astute accountant, I immediately multiplied this out by 12 and mentally reviewed our budget. On principle, I refused to accept this. I can pay $30 a month and do enemas, or pay $130 a month for the luxury of not doing enemas.

So, as I sit here, holding fluids in my rear end, I reflect upon people who can’t afford to buy insurance. These aren’t deadbeats. These are people I go to work with every day. They are not lazy. They never call in. They aren’t relying on welfare. In fact, most people who are on welfare aren’t lazy either. They have actual, verifiable needs that we as a society should chip in and help. I know people with devastating diagnosis’s who have been told that they don’t qualify because there are still some jobs that they can do. The idea that America’s welfare programs are clogged up with lazy people who have multiple kids just so they can stay home is a fallacy. I have always been very healthy, and have never really understood the need for medical insurance until this time in my life. I am coming to realize that I need to advocate for affordable healthcare, and be a voice for those who don’t have one.

I am happy to say that I still have this enema held in. It’s medications are soaking through the walls of my colon. My colon isn’t super happy, and is making that clear through. all kinds of noises. However, I am finally starting to treat this thing.

I would love to hear your stories. Medical bills are the number one causes of bankruptcy in the United States. Together, we can be a voice for change.

As always, listen to your body. You are the only one who recognizes its voice. I know it is telling you this…

YOU’RE PROBABLY NOT CRAZY!!

Author: healthierversionofchris

Hello! My name is Chris and I am many things. Most of my adult life has been spent as a medical science project, with doctors basically telling me I am crazy. Well, guess what? I'M NOT! and chances are, neither are you! I am sharing my experiences with you, in hopes that someone out there may find some common ground with me. If you are just starting out trying to figure out what the deal is, let me help you figure out where to begin. We're all in this together!!

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