This phrase. These five words. I hear, All The Time. At a friends daughters birthday party, running into an old acquaintance, a client I haven't seen for awhile, my hairdresser, the list goes on.
The thing about CIDP (and many autoimmune diseases), is you can't really see the disease just by looking at me. Under the surface, a war is raging between my nerves and my white blood cells; slowly eating away my feelings, my ability to function.
Those that are close to me can see the slight changes. The way I walk. Lifting my legs is more like lifting cement with each step. The constant inflammation in my body causes things to swell. The nerve roots being exposed causes muscle spasms that can be anywhere from my toes to my eyes. The nerves feel like I'm on fire, like I have bugs crawling inside my body and on my skin.
This invisible illness has no known cure at this point. I'm left with taking medications derived from plasma donors to keep my ability to walk. These medications are acting as a bandaid at this point. At any time, it could stop working. At any time, I could lose my ability to walk. At any time.
Can you do another transplant?
Technically speaking, yes. But it's not that simple. A transplant would mean remission again. It also means months away from my family in Chicago, chemo, hair loss, immune system reboot, lots and lots of drugs, a year of recovery, post medications, time lost where I can't work. Money. Lots and lots of money.
My current medication costs $18,000 per month. That comes to $234,000 per year! That's the cost. That's what insurance pays. They are billed $45,000 per month and only pay $18,000. If they paid the billing price, that would equal $585,000 per year. All of that to say, this medication is expensive. I cannot live without it.
Every week, I stick 6 needles into my stomach and inject $4,500 worth of medicine in hopes of going into remission. I have yet to experience a day without symptoms.
So, I'm in that place. You know the one. Where you feel like you're between a rock and a hard place. While I'd love to be disease free again, it will come at a great price to the people in my world, again.
Happy Friday.
