I had a follow up appointment with my myasthenia gravis specialist today. It didn’t go exactly the way I had hoped but overall it went pretty well. My main focus at this point is to get off the strenuous medication regimen we’ve been using to keep my MG at bay. So you can imagine that I was a tad (very) disappointed when I was told that my medication levels would not decrease again until the fall. Logically it makes sense. With the temperatures rising, lowering my medications would be risky. Emotionally, I was feeling a little defeated.

And then what?

Once I got home, I checked the mail and there was an envelope from the company I get my infusion treatments. Open up that bad boy and it was a bill… for $900. Yes you read correctly. NINE HUNDRED DOLLARS. This was for 2 days of treatment prior to my thymectomy. Before you ask, yes it had already passed through insurance and insurance paid their amount. I’m not talking about some shoddy insurance either. I have what many would consider premium high quality health insurance. I’m talking AMEX Black Card level. Yet here I am facing another unexpected medical bill. Clearly I am in the WRONG profession. I’ve heard of inflation but why is the cost of health so high? To add insult to injury for this particular bill, I ended up in the ER after this treatment. Another bill that I’m paying off.

Cost of Ill has Gone Up

I can say that since my diagnosis last year I’ve spent well over $5,000 and I’m probably reaching on the low end. My specialist does not to accept my insurance ($450 initial visit, $175 follow up visits). Like I said before I have pretty good health coverage so after a little paperwork I’m reimbursed (up to a certain amount) after my MONTHLY appointments. Then I have my medications that even in generic form run me about $130 a month. My monthly IVIG treatments at a facility cost per visit. I have to pay for the speciality medication separately. Then you move to the miscellaneous costs like my standing appointments for blood work every three months, my thymectomy surgery and my random ER visits.

I am beyond thankful that with the exception of a few hospital visits and random sick days when I just could not function well enough to make it in, I am still able to work. I still have great health insurance and I still have the funds to cover my medical expenses. But I’m not oblivious to the fact that this is not the case for all. There are so many people whose symptoms are so severe, that they can not. I know worrying isnt healthy but I do think about what will happen if I all of a sudden am unable to work. Who will pay my bills?

Fool Me Once But Not Twice

Last year I was not prepared at all. I mean who plans to get sick on this level right? But now knowing that I have MG and the costs associated with it, I’ve made a few adjustments that have helped slightly ease my financial stress. The first thing I did was rework my budget to include my monthly medical expenses. These are now staples just like the mortgage or the electric bill.

The next thing I did was enroll in the Flexible Spending Account (FSA) program that my job offers and set it to the max limit. This money is pre-tax so it’s almost like I’m saving money. The last thing is to take a deep breath and don’t panic. It’s beyond overwhelming but trust me it’s not hopeless. I’ve found that most billing departments aren’t the evil sorceresses I imagine them to be. They are quite flexible and willing to work with you to set up payment plans. All it takes is a few minutes and a phone call.

Sick is a Business

The fact remains that price of healthcare is obscene. As if being sick is not hard enough, you then have to cope with the financial strain of trying to get healthy. Seriously, why is it so expensive to be sick? I like my money. I work hard for it and I basically feel like I’ve been robbed. My pal Big Worm and I feel the same way about our cash…

Couldn’t have said it better myself Worm.


Morgan Greene is a Maryland chronic illness and holistic wellness lifestyle blogger. After years of struggling with her autoimmune disease diagnosis, Myasthenia Gravis, she decided to combine two of her favorite things…writing and informing others

IsWasWillBe.com was created to have unfiltered discussions about having a chronic illness. It has since become a place to inspire and create a sense of community among women with autoimmune diseases. Morgan loves trying new things and sharing with other spoonies how to live an ill life on their terms.

When she’s not blogging she is probably reading a book, drinking a Coke Slurpee or listening to music.

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