Choice

Choice (noun)
an act of selecting or making a decision when faced with two or more possibilities

Today is the 9th anniversary of starting on treatment for multiple sclerosis. This amounts to about 486 injections, minus illness, birthday week, and travel. Sometimes it feels like it’s been forever, since I no longer really remember a time when I didn’t feel MS. Some weeks it’s matter of fact and others it’s hard. Fortunately the last 1.5 years, it’s been 90% of the former and maybe 10% of the latter.

Statistics say that there are around 1m people living with MS in the United States, and almost 3m globally. But since MS is not required to be reported, we rely on data that is often manipulated, especially in the U.S., since it relies on diagnostic codes, which are often fudged in order to gain insurance coverage.

In 2018 we are lucky to have 16 disease modifying medicines for MS, with more to come. Just a short 20 years ago, people were sent home with steroids (maybe) and told not to move. Also, there are a host of meds for symptoms and side effects of the disease.

What we still don’t have is a cure. I hear this about MS all time, but I don’t really listen since I know how complex this neurological disease is and certainly not easy to dissect. That said, I do believe there can be better targeted treatments with less side effects. Better (and more) research in stem cells from your own body, rather than having to go through the toxic process of obliterating your immune system, like for people living with cancer.

It’s such an odd thing living with a disease that people can’t see and one that each of us experiences in very individual ways. As they say, when you’ve met one person with MS, you’ve met one person with MS. #snowflake

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